hearing aids

How to Plan for the Cost of Hearing Care

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Out of the estimated 48 million Americans living with some degree of hearing loss, only one in five wears hearing aids. The main reason? Cost. And these aren’t the only costs associated with hearing loss. Over the course of a lifetime, healthcare fees can add up to tens of thousands of dollars—or more. Here are tips to help you budget and plan for these expenses.

Find a health insurance plan tailored to your needs.
Hearing aid devices usually range from $1,000 to $4,000 each and may require replacement roughly every five years. Many insurance companies do not provide full or even partial hearing aid coverage. Currently, only 22 states require insurance companies to provide hearing aid coverage for children, and only five states have provisions that include coverage for adults. Government healthcare programs such as Medicare offer little to no coverage, with the breadth of coverage varying from state to state for Medicaid. 

If your current health plan does not cover hearing aids, an accredited insurance broker or agent can help you identify a plan that will work best for your situation and location. Make sure your agent represents several major insurers to ensure they are not incentivized toward selling you a specific plan.

Plan and budget to cover your healthcare costs.
Plan for three types of expenses: fixed monthly premiums to your insurance company; routine out-of-pocket expenses (e.g., hearing devices); and unexpected costs (e.g., emergency room visits). In addition, make sure you understand all the costs included with your health plan, including deductibles, copays, co-insurance, and the out-of-pocket maximum. Once you’ve identified all these expenses:

Add up the cost of your fixed premiums and routine out-of-pocket expenses. Divide the total by 12 and aim to save that amount each month. 

Open a separate medical emergency fund. You’ll want to start saving enough to cover your deductible and eventually, your plan’s annual out-of-pocket maximum. Consider opening a high-yield savings account, as they often have no fees and no minimum balance and offer higher returns than a typical savings account. 

Ask your employer whether you’re eligible for a Health Savings Account (HSA) or Flexible Spending Account (FSA), both of which allow you to make tax-free contributions to save for medical costs. You may be able to use HSA or FSA funds to pay for hearing aid devices and hearing aid batteries. One key difference is that HSA funds automatically roll over from year to year, while FSA accounts have a use-it-or-lose-it provision. 

If you’re raising a child with hearing loss, consider developing an estate plan to help ensure they are financially secure.
A financial planner or estate planning attorney can help you navigate this complex topic and develop a plan tailored to your financial situation as well as to your child’s needs. A trust, for example, can ensure your child’s inheritance is carefully managed according to your wishes. If your child is eligible for Medicaid or Supplemental Security Income (SSI), a special needs trust will ensure that he/she will remain eligible for federal benefits. 

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The costs associated with hearing loss can be overwhelming, but you don’t have to navigate them alone. A trusted financial professional can help you plan for these expenses or ensure your loved one’s costs are taken care of after you’re gone. 

Matthew Phillips is a wealth adviser at Trilogy Financial, a privately held financial planning firm with advisers across the country. Based in Corona, California, Phillips partnered with RISE Interpreting and California Baptist University to deliver American Sign Language–certified translation, workshops, and other services to better serve his clients. For more, see trilogyfs.com. This article originally appeared in the Spring 2019 issue of Hearing Health magazine. For references, see hhf.org/spring2019-references.

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I Hear a Symphony: For U-M Violin Student, Hearing Loss is Not a Disability

Violin teacher Danielle Belen uses a lot of gestures and hand signals but not many words. Her student, Abigel Szilagyi, relies on vibrations, muscle memory and instincts.

Learning to play an instrument can be difficult for anyone, but Szilagyi must work through her own challenges: She was born with just 50% of her hearing.

When Belen, an associate professor of violin at the University of Michigan School of Music, Theatre & Dance, and Szilagyi, a violin soloist and chamber musician, started working together in California seven years ago, it took nearly two months before Belen learned her then-14-year-old student had only half of her hearing. And she didn’t notice herself—the musician’s mom broke the news about her daughter’s unique circumstance.

Credit: Szilagyi personal archive

Credit: Szilagyi personal archive

“Her mother asked me if I had noticed anything different about Abi,” Belen said. “I quickly answered, yes, she is very talented and I am totally drawn by her passion.”

The answer was not wrong, but incomplete.

“Her mom looked directly into my eyes and said, ‘Abi is partially deaf!'” Belen said.

Belen had never worked with a student who was hard-of-hearing, so it was difficult to imagine how this would work.

“But something immediately in her personality showed me that it would be possible,” she said. “I was quite impressed with her ability for her age.”

With passion and extra discipline, Szilagyi has never stopped playing the violin. In 2016, she was accepted to the U-M School of Music, Theatre & Dance and moved to Ann Arbor, where Belen has taught since 2014.

Szilagyi, who will be a junior at U-M this fall, said she had many instructors before Belen, but there was no connection.

Credit: Szilagyi personal archive

Credit: Szilagyi personal archive

“I wanted someone who believed in me and who saw my hearing problem not as an inability, but an ability,” she said. “I wanted someone who understood my hearing disability was as much a part of me as being a musician because I always wanted to connect these two parts of me.”

When Szilagyi was 4, doctors discovered she was born with a 50% sensorineural hearing loss in both ears. A couple of months later, she got her first set of hearing aids, and on the way home heard a “lovely and vibrant singing sound.”

“I then heard the birds chirping for the first time in my life,” Szilagyi said. “I was so drawn to how they could make such beautiful music. This sparked my desire to become a musician.

“It is amazing how your body can adapt. I am very observant. I learned lip reading, body movements, facial expressions and other types of communication that really help me to play well and find the correct tune.”

Belen explained that when Szilagyi’s basic level of hearing is diminished, her other senses pop up, especially her sense of touch.

“She can imitate sounds and mannerisms and has a remarkable skill of imitation,” Belen said. “Her visual cues are very sophisticated. She is like clay—moldable, flexible—yet she has her own identity as well. She is truly the ideal young artist.”

Hearing aids, ear plugs and no ear plugs

During her freshman year at U-M, Szilagyi suffered some serious ear infections that led to further damage to her fragile hearing. During the entire fall semester, she could not wear hearing aids because of sharp pain.

Again, no quitting, just a break and new adaptations. Now, the only way Szilagyi can play and tolerate the sounds is to wear ear plugs.

“It is a hard thing to explain,” she said. “While I struggle to hear ordinary sounds and conversations at a normal volume, my ears are extremely sensitive to loud sounds and pressure and it causes sharp pain in my ears.”

Her professor works closely to adapt to whatever Szilagyi needs to do.

“Her lessons are a bit crazy to watch,” Belen said “She has her hearing aids near by and they go in and out. When I need to talk to her, it goes in, and when she is playing, it goes out. It is challenging, but somehow, we are managing it.

“Instead of being frustrated, she laughs. As serious as the situation is, she is able to look at the big picture and realize that this is all joy. She has an amazing attitude. I know there are tears, sacrifices, pain and frustration, but there is also gratitude. She always rises from the challenges, and I am sure she will have a unique and important career as a violinist.”

This article was repurposed with permission from Michigan News, University of Michigan.

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Have Loop, Will Travel

By Stephen O. Frazier

I'm 80 years old with a hearing loss. What I've learned through my travels is that I need more than just my hearing aids.

In New York City not long ago, I expected to have a problem when I approached the fare booth to buy a subway pass. I knew the roar of trains constantly passing through makes it difficult for someone with typical hearing to communicate, let alone someone like me with a severe hearing loss.

National Association of the Deaf via hearingloop.org

National Association of the Deaf via hearingloop.org

But when I noticed a sign for hearing loops, a blue symbol with an ear and a “T,” I turned off my hearing aids’ mics and turned on their telecoils. To my surprise and delight, I heard quite clearly the attendant’s voice, just as a train was passing through underneath.   

Telecoils, or T-coils, are tiny coils of wire in my hearing aids that receive sound from the electromagnetic signal from a hearing loop. A hearing loop, in turn, is a wire that surrounds a defined area and is connected to a sound source such as a public address system. It emits a signal that carries the sound from its electronic source to the T-coils in my hearing aids, which are already optimized for my hearing ability. It’s as simple as flipping a switch to gain access to sound in any looped setting.

Beyond New York City, hearing loops are available around the country in auditoriums, train stations, airports, places of worship, theaters, and more. For a full and growing list, see time2loopamerica.com and aldlocator.com.

The technology also works with devices called neck loops—personal loops that replace the headsets used in assistive listening situations (such as a museum audio guide, in-flight entertainment, or a live theater production) and send sound to the telecoils of hearing aids.

Travelers with hearing loss should look for the international hearing loop symbol, which is usually blue in the U.S. but may be maroon or green or some other color abroad. If you aren’t sure whether your hearing aid has T-coils, talk to your hearing healthcare provider. Keep in mind the smallest-size hearing aids sometimes do not come with telecoils.

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Here are some of my other travel tips, as a lifelong travel enthusiast:

  • If you have a Pocket Talker or some other personal sound amplifier, take it along with a neck loop to hear over cabin noise in flight.  

  • Download a speech-to-text app like Live Caption or InnoCaption to your cell phone to let you read what's said to you by others.

  • Download a captioned phone app such as the one from Hamilton CapTel so you will have captioned phone access during your trip, for both placing and receiving calls.

  • Pack extra hearing aid batteries and, if you have one, an extra hearing aid for the trip.  

  • If your hearing aids are rechargeable, be sure to take the charger and put it in your carry-on in case your checked luggage doesn't arrive with you.

  • Take a pen and notepad with you to communicate with ticket/gate agents in case you can't hear them over the noise in the airport.

  • Download the SoundPrint app for its Quiet List that identifies restaurants and bars in several U.S. cities, including popular destination New York City, that are less noisy than others and more conducive to conversation.

  • Print your ticket and boarding pass at home, or send it to your phone.

  • If available, take a seat near the information counter at the gate and alert the attendant to your hearing loss. Request that you be notified of any emergency or other announcements. Often the agent will add you to the group allowed to preboard.

  • As you board the aircraft, alert the flight attendant(s) to your hearing loss so they will know to pay attention to your communication needs, and read the safety instructions in the pocket in front of you—you will probably have difficulty understanding the oral version offered by the flight crew.

  • Once you reach your destination, if staying in a hotel, alert the desk clerk to your hearing difficulty so staff can be instructed to personally inform you of any emergency, e.g., fire alarms. If you feel you need it, ask for an Americans with Disabilities Act (ADA) deaf/hard-of-hearing kit from the hotel; they are required to have them available.  These kits include such items as a door knock sensor, telephone handset amplifier, telephone ringer signaler, visual/audio smoke detector, and a special alarm clock. Not all hotels are in compliance with the ADA so check ahead on the availability of a kit.

  • And most of all, relax and enjoy your travels!

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Stephen O. Frazier is a hearing loss support specialist, the former Hearing Loss Association of America (HLAA) chapter coordinator for New Mexico, and director of Loop New Mexico. He serves on the national HLAA Hearing Loop Steering Committee and on the New Mexico Speech-Language Pathology, Audiology, and Hearing Aid Dispensing Practices Board. To learn more about loops, see hearingloop.org.

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The Man Who Chased Sound Wore Hearing Aids

By Sue Baker

The inventor who changed music and the guitar player who had a room full of music awards wore hearing aids. Legendary musician Les Paul spent his whole life looking for the perfect sound. Ironically, for a good portion of his life he had to pursue his passion for sound while wearing hearing aids.

Before Les Paul performs at the Iridium Jazz Club in New York City, Marty Garcia adjusts his hearing enhancers. Credit: Christopher Lentz.

Before Les Paul performs at the Iridium Jazz Club in New York City, Marty Garcia adjusts his hearing enhancers. Credit: Christopher Lentz.

Les’s hearing loss started in 1969 when a friend playfully hit him over his right ear, causing his eardrum to break. Surgery to repair the damage had its own complications and Les was left with compromised hearing. A few years later another friend did the same thing to Les’s other ear with the same devastating results.

Les disliked how his initial hearing aids made voices sound “tinny” and higher pitched than normal and began to look for a solution. He explored options with numerous audio and hearing aid companies. In the mid-1990s Les connected with Marty Garcia who over time became his go-to audio friend, helping to improve his hearing aids.

The founder of audio and earphone company Future Sonics, Marty created the customized Ear Monitors brand to help entertainers reduce vocal and hearing fatigue. Les tried Ear Monitors during performances and said the devices’ special transducers took his hearing back 35-plus years.

Each Monday night Les performed two sets at New York City’s Iridium Jazz Club. For two hours before the first performance, he did a sound check, analyzing every component. Les had the settings on all the sound equipment photographed so that each week he could tinker with them and study the effect of his changes.

After the shows, Les wanted to be available to sign autographs and meet his audience. To his frustration, he found that it took him too long to change from his onstage Ear Monitors to his “regular” hearing aids. Many fans left before Les could connect with them. Marty’s response was to create a hearing enhancer that Les could wear while performing as well as for everyday use.

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Les often joked about his hearing aids. If a battery went out while he was performing, Les would tell his audience not to get their hearing aids at a hardware store. He and Marty also understood that people hear not just with their ears, but with their brains. Together they created a way for the man who chased sound to be able to continue to enjoy and perform it.

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Sue Baker is the program director for the Les Paul Foundation, and thanks Marty Garcia, Christopher Lentz, and Arlene Palmer for help with this article. For more, see lespaulfoundation.org. Hearing Health Foundation is grateful to the Les Paul Foundation for its commitment to funding tinnitus research through HHF’s Emerging Research Grants program.

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8 Tips for the New Hearing Aid User

By Brad Grondahl

I am a second-generation hearing aid specialist, now retired. My father had a hearing loss, caused from noise exposure on the artillery range while serving in the U.S. Army. Initially he wore a body, or pocket-type, hearing aid with an external cord and receiver. Eventually he came to sell hearing aids himself, driving to visit prospective clients in their homes.

After my father passed away, my mother helped push for the eventual passing of licensing laws for hearing aid dispensers in the state. After college, I took over the business, earning licenses and certifications for dispensing hearing aids and also taking audiology coursework.

I share this advice I’ve gleaned after decades of dispensing the instruments:

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1) Entering the world of improved hearing with amplification is not at all like being fit with new glasses for visual correction. With glasses, you put them on and instantly everything is clear. This is not generally true of hearing devices, which have to be personalized and programmed to your individual hearing ability—a process that can take several visits to your provider.

2) Since hearing loss usually comes on gradually and you compensate and become accustomed to softer sounds, it can be a shock when you first use hearing devices—especially if your hearing loss has been untreated for years. (A 2018 Ear and Hearing study by Hearing Health Foundation board member Judy Dubno, Ph.D., and team found the average time between hearing aid candidacy and adoption is 8.9 years.) Many things may not sound as you feel they should, including your voice. But with time and effort, you can train your brain to recognize the new sounds as normal.

3) There is no such thing as a “one and done” approach with hearing aids. Ongoing care and maintenance will be required, including inspecting your instruments daily when you put them on.

4) Sometimes a simple dead battery is the culprit if an aid doesn't seem to function. Always try at least two batteries to be sure it is not just a dead battery.

5) Earwax can be another challenge. If earwax is blocking the sound outlet—the part of the aid that enters your ear canal—the devices may seem weak or have no amplification. Replace the wax filter or clean the outlet or earmold using a special cleaning tool.

6) Earwax in the ear canal itself will affect sound. But do not use cotton swabs, hairpins, or any other “home remedy” to clean your ear—ask your hearing provider for help. (The news is full of earwax-cleaning mishaps, such as, recently, a British man’s brain infection that ended up resulting from swabs!)

7) All styles of instruments have their own set of maintenance issues, too numerous to review. If the problem is not the battery or earwax, contact your provider to help troubleshoot a problem.

8) Hearing loss patterns change over time, gradually, and your brain will again adjust to softer sounds. Retest annually and adjust your hearing aids as needed.

A licensed hearing aid dispenser in North Dakota since 1969, Brad Grondahl, BC-HIS, has served as the president of the North Dakota Hearing Aid Society and as a member of the State Examining Board for Hearing Instrument Dispensers and the State Examining Board for Audiology and Speech Language Pathology, both in North Dakota. For references, see hhf.org/spring2019-references.

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Ready to Take On the World

By Neyeah Watson

Beginning at age 4, I had ear pain that caused recurrent infections. My mother, worried, took me to multiple ear specialists, the fourth of whom warned these infections could result in a conductive hearing loss. At 7, I underwent a successful corrective ear surgery that eliminated my infections almost entirely. Though my hearing has been salvaged, I still endure frequent sinus infections and ear pain that require monitoring.

My personal experience makes me grateful Hearing Health Foundation (HHF) has long been a vocal advocate for early intervention for babies and children with hearing loss. HHF’s primary focus is on advancing hearing loss research to find new treatments, and I look forward to what will one day be medically possible for my aunt and grandmother who live with bilateral moderate sensorineural hearing loss. 

Because affordable direct patient services are needed to put HHF’s research findings into practice, I’m also greatly appreciative of organizations like The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, a New Jersey nonprofit that exists to support families of babies with hearing loss during the most critical years of brain development. Public funding in the state covers only about one third of the costs needed for early intervention, and The Sound Start Babies Foundation goal is for all families to have access to this quality of care, regardless of their ability to pay.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

The Sound Start Babies Foundation was founded as Lake Drive Foundation in 1997 by community volunteers and parents of children with hearing loss in Mountain Lakes, New Jersey. Inspired by the foundation’s history and mission, I was eager to interview a few representatives from the organization, Jessica Griffin and Kayley Mayer, who make this work possible.

Griffin, who is President, discovered Sound Start Babies™️ when her son, Ian, was born profoundly deaf. Sound Start Babies™️ was Ian’s early intervention provider and greatly helped her family through his hearing loss journey, which included his cochlear implantation at 10 months. In gratitude, Griffin joined the volunteer Board of Trustees in 2014 and was appointed President after two years of service.

Kayley Mayer is a Teacher of the Deaf and Program Coordinator. She began working for the Sound Start Babies™️ program in 2010, the first year the full-day, inclusive nursery program opened up. For her first eight years, she taught in a nursery classroom and provided home-based services for children with hearing loss and their families. Now, she is teaching in the classroom, providing family training to families, and  working on programming development. Although Mayer, unlike Griffin, does not have a personal connection to hearing loss, she finds fulfillment in the progress that families gain in their short time with program.

Griffin attributes members of the Sound Start Babies™️ staff, like Mayer, with her son’s preparedness for mainstream kindergarten this fall at age 6. Her goal as President is to make sure that every child who has a hearing loss has the same wonderful experience as her son. As Mayer notes, each impactful experience is unique. “Every family is at a different point when we meet them, but by the time the child and family graduate from our program, they are truly ready to take on the world,” Mayer says.

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We are all fortunate for resources like Sound Start Babies™️ that help children who need hearing loss intervention succeed developmentally. Hearing is a precious gift, and I learned at age 7 that your hearing can be stripped from you without notice. I am grateful my doctors and parents acted promptly to ensure my hearing was preserved, making sure I, too, could be ready to take on the world.

HHF marketing and communications intern Neyeah Watson studies communications at Brooklyn College. For more information about Sound Start Babies™️ and The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, see www.soundstartbabies.com.

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Doing My Best

By India Mattia

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My hearing loss appeared suddenly, at age 61, when I woke up for work unable to hear in my right ear. With no history of difficulty hearing, I was completely stunned. Did I, I wondered, damage my ear with loud music in my headset yesterday?

In a panic, I requested an immediate appointment with my primary care doctor. He prescribed antibiotics and recommended I see an ear, nose, and throat doctor (ENT, or otolaryngologist) if my hearing did not return.

The antibiotics did not help my hearing, and upon the visit to the ENT I learned I had become completely deaf in my right ear and had developed a small hearing loss in my left ear. She suggested injecting steroids into my right ear to restore my hearing. I was apprehensive about having a needle stuck in my ear, but the doctor assured me that the novocaine would numb any pain. I agreed, and the procedure made me feel dizzy.  

One week and two injections later, my hearing had not come back. The ENT could not identify the cause with certainty. She thought it might be an infection. But I couldn’t think of ways I would have gotten infected, and to me I didn’t see any obvious signs of an infection.

Soon my hearing loss was accompanied by vertigo, tinnitus, and ear pain. Every time I moved a certain way, I felt my head spin. I relied on the keep the radio to block out my tinnitus and took Tylenol to dull the pain. My ENT referred me to a specialist at John Hopkins Hospital, but the first appointment I could secure was two months away, in August.

Meanwhile, I began to adapt to the challenges of hearing loss in my daily life. No longer able to hear my alarm clock to wake up for work, I switched to a vibrating pillow alarm. I watched TV with Bluetooth headphones to avoid disturbing my family with the high volume I needed to hear. I couldn’t manage noisy spaces, though. Restaurants, outdoor events, and loud traffic were unbearable to me.

I began to feel embarrassed and ashamed of having to ask people to speak louder or repeat themselves. I was afraid to tell my coworkers at the real estate office where we worked, but confided in my supervisor, who was sympathetic. Outside of work, my husband often advocated for me by telling others about my hearing loss.

When I thought circumstances couldn’t get worse, I learned my office was to close in July, leaving me without a job. I hoped to make ends meet with the severance pay and unemployment compensation while looking for work.

The John Hopkins doctor confirmed an infection had caused permanent sensorineural hearing loss in my right ear. He recommended a hearing aid, but I cannot afford one.

I remain without a job and my unemployment compensation has ended. I have had a few job interviews—but have kept my hearing loss a secret—and have done my best understand the interviewers’ spoken questions. Aside from my hearing loss, age discrimination makes job hunting difficult. I don’t qualify for social security disability benefits because my hearing loss is only in one ear.

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All this said, my hearing loss has led me to make some positive lifestyle changes. I read more often than before and have swapped rock and roll for soft music. I’ve reduced my sodium intake and eliminated caffeine which is supposed to improve blood flow to the ear. I ride an exercise bike and have taken up t’ai chi to stay physically active.

I applied for early social security retirement since I will be 62 in June. I am also applying for social security disability for both my hearing loss and asthma, which I have had since my late 20s. I am hopeful something will come through. My story may not have an inspiring ending, but I’m doing my best and looking toward better days.

India Mattia lives in Maryland.

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A Woman's Canine Ears

By Barbara M.      

I always knew I wanted to work with people after high school. Though I struggled throughout my education, I graduated, miraculously, thanks to my supportive family and hearing aid technology. With a high school degree I was eligible for Vocational Nurses (VN) school, a career I maintained for over 23 years.

My sensorineural hearing loss was diagnosed at around age 4, well before newborn hearing screenings were commonplace, in 1954. “Barbie needs to see your face when you talk, Mommy,” my sister announced one day, cluing my parents into a possible hearing problem.

Barbara and her most recent hearing dog (HD), Fallon.

Barbara and her most recent hearing dog (HD), Fallon.

I wore behind-the-ear hearing aids and equally relied upon speech-reading, but academics were a constant challenge. Math was the most difficult for me because my teachers often faced the chalkboards, not us students, while writing and explaining equations. My family spent many hours tutoring math to me to ensure I passed.

After high school, I was employed as a nurse’s aide in a long-term care facility. I enjoyed working with and helping the elderly patients, which encouraged me to apply to VN training school. I entered with strong professional references and my two instructors were aware of my hearing loss, so I felt secure.

During the last week of the six-week academic training, which immediately precedes clinical duty training, one of the VN instructors requested a private meeting. She had concerns about my hearing loss. “What if you’re in a situation where you could not hear a patient call/cry out?” she pressed.

Devastated, I reasoned with her hoping she would allow me to begin clinical duty on a trial basis to prove my ability to meet their expectations. I suggested this even though I knew in my heart it would personally difficult to withstand 17 additional months of required training under her surveillance. She pushed back, expressing I could be jeopardizing a patient's life or she could lose her job. I was crushed! I ultimately chose to withdraw from this VN school, knowing I’d be accepted to another school. I was—and graduated to go on to pass the California State Board for licensure.

Some time after my licensure, I was driving past my first VN school and a thought occurred to me; I needed to share my good news with my once doubtful instructor. The instructor with whom I spoke remembered me and congratulated me on my achievement. We chatted amicably before she revealed that the 'other' instructor had since resigned—due to hearing loss she experienced the year after I withdrew from the VN program. I was in disbelief! I hoped she, too, had not faced discrimination. Empathetically, I expressed my concern that no one should be discriminated against because of their disability.

About halfway into my nursing career, in the 1980s, I found myself with the need to to hear more and relied more on speech-reading. I often felt tired and mentally overloaded in noisy environments. One of my biggest challenges during this time was caring for my son, born in 1987. My husband, a firefighter who often worked 48-to-72-hour shifts away from home, cleverly devised a sound-activated light system to alert me when our son made noise or cried in his crib. This was a perfect solution, I thought—except in the case of power outages.

I needed to find another way to alert me to my son's voice at night. It came to me the following year while reading National Geographic, where I saw an advertisement about Canine Companions for Independence (CCI), a nonprofit organization that enhances the lives of people with disabilities by providing them with service dogs and ongoing support. I applied and was paired up with Ronnie, my first Hearing Dog (HD), who helped me immensely by alerting me to important sounds within my home.

Gradually and for unknown reasons my hearing loss continued to decline and I found myself avoiding noisy establishments & places. In 1999 I made the decision to resign from employment so as to ensure quality patient care I no longer was able to auscultate (hear) important lung sounds using the stethoscope. With my skills as a nurse, I chose to transition to be a care provider for my aging parents-in-law, and later, my mother.

I am grateful I was able to remain productive after my resignation, largely because of the help of Ronnie and, later, his successor, Fallon, a Golden Retriever/Labrador mix. Fallon, who passed away in 2014, alerted me to ringing doorbells, whistling tea kettles, and ringing telephones. Though I’m no longer helping people, I’m so happy that Fallon was able to help me.

Ronnie and Fallon helped me to overcome my hidden handicap, a personal milestone towards acceptance of my hearing loss.

Barbara lives in Oregon with her husband, Dan.

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HHF Endorses California Pediatric Hearing Aids Bill

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

Hearing Health Foundation (HHF) has formally endorsed AB 598, a bill in California calling for the expansion of hearing aid insurance coverage for children.

California resident Elizabeth Keithley, Ph.D., Chair of HHF’s Board of Directors, recently wrote a letter of support to Assemblywoman Lorena Sanchez, who has stopped earlier versions of the bill. You can read her letter below.

If you live in California and would like to identify and contact your representative about AB 598, you may do so here.


Letter of Support from Elizabeth Keithley, Ph.D.

Dear Assemblywoman Lorena Gonzalez,

Thank you for the leadership you provide to San Diego. I write to you as the Chair of the Board of Hearing Health Foundation (HHF) and Professor Emerita of Surgery/Otolaryngology Head and Neck Surgery at the University of California, San Diego, School of Medicine. I am requesting your support for AB 598, introduced by Assemblyman Richard Bloom, which will require insurance coverage for children’s hearing aids in our state.

HHF is the nation’s largest nonprofit funder of hearing and balance research. Our scientists’ work has led to development of cochlear implants, innovative ear treatments, and progress toward biological cures for hearing loss. We work tirelessly to better the lives of the 50 million Americans with hearing loss.

Beyond research, HHF has been a longtime advocate for Universal Newborn Hearing Screenings, federally mandated in the 1990s. Identifying hearing loss at birth enables parents to promptly pursue intervention for their child. The first six months of a child’s life are the most critical in forming auditory pathways in the brain to hear.

The majority of individuals with sensorineural (permanent) hearing loss, including children, can benefit from hearing aids as treatment to communicate, learn, and develop healthily. A pair of pediatric hearing aids can burden a family by as much as $6000 per pair, which generally must be replaced every three to five years. This is an out-of-pocket expense of over $40,000 before a child reaches 21.

This immense financial barrier to treatment result in absence of treatment that then inhibits children’s social, speech and language development, and academic performance. For an individual child who does not receive intervention, the estimated cost of special education and loss of productivity is $1M.

Right now, California urgently needs the help of leaders like you to relieve families from the stress of choosing between hearing aids for their children and other health necessities. The strength of the future CA workforce depends on it.

Thank you for your consideration. I truly hope you will act to support California’s children through AB 598.

Sincerely,

Elizabeth M. Keithley, Ph.D.

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Comfortable

By Joe Mussomeli

Being uncomfortable can be nerve-wracking, strange, and sometimes scary. For my brother, Alex, 14, being uncomfortable is all of these things. Born with a hearing loss, Alex has felt uncomfortable so many times in his life it’s impossible to count them all. He recently found himself in an especially uncomfortable situation when he was invited for a swim and sleepover at a friend’s house.

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To most teenagers, these activities aren’t uncomfortable; they’re fun. But when Alex received his invitation, he was overcome by anxiety related to his hearing loss. He worried he’d take too long to change into his swimming clothes, which include a shirt that attaches to his waterproof cochlear implant (CI). He dreaded others seeing him wear this. He feared he wouldn’t understand every word the other kids said in the pool. Above all, he was nervous the other kids would distance themselves from him because he was different.

Swimming wasn’t even the most distressing part. It was the mention of a sleepover that troubled Alex most. Just the mention of the word “sleepover” made his stomach tie into a knot. Every night, he removes his CI and hearing aid. He places the devices in a dry and store dehumidifier box, powers on the box, and then, finally, goes to sleep. Carrying out this routine at a sleepover would be, in theory, extremely difficult. Alex would have to keep his hearing devices on while talking to his friends at night. At the conversation’s end, Alex would have to take off his devices, but if it resumed, he would have to go through the hassle of putting his devices back on, or he would have to be left out. The whole situation would be unconventional and nerve-wracking for him. Essentially, it would be uncomfortable.

Alex was so uncomfortable that he almost declined the invitation until our dad pointed him in a different direction. The morning before the sleepover, Alex asked Dad if he should go to his friend's house. My dad told him that he should. Alex was quiet for a moment before he poured out all of his anxiety. He told him about how nervous he was and all of his other discomforts. Dad responded, “I won’t tell you what to do, but I will tell you this: Do you want to be uncomfortable your whole life, or are you willing to take a chance?” He left Alex to think over these words.

In the end, Alex didn’t go to the sleepover, but he went for a swim. Yes, it did take him longer than the other kids to change for the pool, and yes, he didn’t hear every word his friends said in the pool. But he still went, he dove into a pool of discomfort, dealt with it, and to his surprise, he had a bit of fun. He texted my dad an hour later asking if he could stay until at least 9 PM. My dad replied with three words: “If you’re comfortable.” Alex replied with two: “I am.”

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